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Monday, June 13, 2016

AIDS and Medical Aid in Dying - are there lessons to be learned?

Canadians debate currently where to draw the line in the sand in terms of eligibility criteria for medical aid in dying. The federal government is determined to push thru a bill that is uncontroversially unconstitutional by limiting access to terminally ill patients.

Today the Globe and Mail (a paper that supports our government's restrictive approach to medical aid in dying) published an unusually thoughtful commentary by Konrad Yakabuski in support (you won't be surprised to hear) of said restrictive approach.

Yakabuski and I have something in common, something important. We both lived thru the early years of the HIV/AIDS epidemic, we both lost loved ones to the disease. Yakabuski mentions that his brother and several friends of his died of the ravages of AIDS, 'with dignity, the old-fashioned way'. Yakakuski's main point (a very reasonable point) is that eventually treatments for HIV infection came about that permit HIV infected individuals today to live basically healthy lives. If medical aid in dying would have been available to them, some HIV infected patients may have chosen to end their lives prematurely, however, if they had decided to stick it out, they might have been able to hang on for long enough to benefit from the life preserving drug regimes that exist today. He then makes the same claim about anti-depressants (arguably he is terribly mistaken on that frontier, but that's unimportant for the purpose of his broader point, it doesn't rely on him being right on that count).

Well, I'm a gay man who has seen very many of his friends succumb to HIV infection in the same years that Yakabuski writes about, and I disagree entirely with his argument and his policy recommendations. You won't be able to see this response in the Globe and Mail, unfortunately, because the paper has been reduced to a propaganda vehicle for a restrictive assisted dying regime.

There has been some debate both among medical ethics people, but certainly also among HIV infected people about medical aid in dying, in the 1980s. One leading bioethics journal, the Hastings Center Report, published many years back a piece by my friend, the late Michael Callen, entitled 'If I have AIDS, then let me die now.' Michael had, of course, no intention whatsoever, to die on AIDS. In fact, years after he published his commentary he wrote a book called Surviving AIDS. Eventually he succumbed to the disease, shortly before life-preserving treatment regimes came onto the market. I have lost far too many friends like Michael.

But I digress, let's return to Yakabuski's commentary. Why would educated AIDS activists, like Michael, have written a commentary for a mainstream medical ethics journal in which they argued that they should be able to receive medical aid in dying when they thought their time had come? Simply put, it was about self-determination. Something maligned by Canadian anti-choice activists as 'autonomy fundamentalism' (not Yakabuski's words!). It was a choice for Michael to make for himself, not for me, not for government, it was his call to make.

The problem with timelines in this context is that we can never know whether, if at all, and when a successful treatment for a particular ailment comes onto the market. Yakabuski briefly mentions the horrible deterioration in health and quality of life HIV infected people in those days experienced. It was worse than that, they had seen friends and lovers wither away, they knew what was coming their way. It's all nice and well to describe this withering away as 'dignified and old-fashioned', but frankly, for many of these young people who died during those years there was nothing dignified about their dying, and no amount of hand-holding and caring would have made their disintegrating lives any more dignified. I am deeply troubled about the euphemisms Yakabuski deploys to describe what was actually happening in our community. I also have no doubt that that is how he subjectively experienced or remembers his brother's death. It is not an experience that is representative of how dying of HIV was experienced by many, if not most, of those who died in those years.

The question then, surely, is whether these patients were entitled to call it a day when they decided they had enough, or whether the state had any right (as the Liberal government's legislation proposes) to force them to stick around and deny them access to medical aid in dying on the ground that some drug might come about. My answer: Of course they were entitled to make those choices and see those choices respected and supported. That the state would think it has a role to play in forcing such patients to stick around no matter what, or commit suicide by some gruesome means, is just mind boggling.

HIV is different to depression, of course, in that it was actually an illness where death would have been reasonably foreseeable, so HIV patients arguably would have met the standard set out in the restrictive government draft legislation of bill C14.

I have published a year ago with Suzanne van de Vathorst a lengthy piece on treatment resistant depression and medical aid in dying. May be take a minute or two to read it. It's available here. The same link will also take you to published responses, including one or two making Yakabuski's case, as well as our considered response to those arguments. The article also supplies hard data on the actual large scale failure of available treatment modalities that Yakabuski glosses over in his piece. The argument here is the same as above, if a patient is competent at the time of decision-making and he or she does not consider their lives worth living, and available treatment options have been exhausted, we as a society have no right whatsoever to force such people to stick around in the hope that some treatment might come about during their lifetime. It's a decision only such patients can make for themselves. Whatever they decide, they deserve our support.

4 comments:

Very well written and argued, Udo. I agree with you on all counts. It makes no sense to restrict access to assisted dying contingent upon the possibility of a therapy in the future. They may cure all diseases in 2093 but this doesn't say much about the suffering of today or about a person's self-determination.

Of course, now we know that Justin has had his way, but surely, to have passed a law which is uncontroversially unconstitutional should not only bring his government into disrepute, but also to have the legislation challenged in the Supreme Court. Do you know of any movement in this direction, of what would be necessary in order to launch such a challenge?

I was quite encouraged by the Supreme Court ruling. However, my wife, who was helped to die by Dignitas in Zurich, would not be accepted by the present legislation, and would be forced by the legislation to suffer intolerably, perhaps for many years, because of it.

I know that Dying with Dignity (Canada) has expressed a wish to carry things forward, but it is not clear that they have any clear course to follow. Since you are doubtless in communication with members of your Royal Society of Canada Task Force as well as others concerned with this issue, is there any sign of a movement to bring this before the Supreme Court? If I had the money I would do it myself, to honour my wife, and to enable others like her to receive help to die if that is what they choose. The ridiculous notion that the limitation was added to protect the vulnerable is just a charade, and someone needs to show the government up for the conservative organisation it really is. Justin, no doubt, was under some pressure from the bishops to add this qualification, and I don't like the idea of religion calling the shots on this one.

Hi Eric, thaks for your thoughts on this. I have explained in an opinion piece for the Globe and Mail yesterday what options there are re the way forward you mention. Check it out here, http://www.theglobeandmail.com/opinion/canadas-assisted-dying-legislation-is-unconstitutional-now-what/article30520572/ .

Thanks Udo. Great article by the way. It's angering that the government has forced us to go through the whole legal process again, instead of the Court taking up the case, reviewing the legislation, and then making a ruling. Government's should not be able to defy the Supreme Court in this way without immediate repercussions. Canada fails again. I am losing respect for "my" country.